Rare throat condition: Eagle Syndrome

Hello everyone, my name is Gabriel Mendez. I reside in Phoenix Arizona. Today is Monday, July 7 approximately 9:25 AM. I am making this post. Long story short. I have been suffering with chronic throat clearing feeling like someone is choking me when I speak feels like something is stuck in my throat Went to several different. ENT specialists are giving me the same medication’s telling me it is acid reflux and postnasal drip I have been dealing with this for about 15 years now finally got diagnosed by a doctor in California by the name of Dr. Ryan Osborne, who specializes in rare conditions he took one look at the previous CT scans that I had sent over to him and called me back not even five minutes later and confirmed that I have Eagle syndrome not only on one side but on both sides. I told him I only feel pain and constant discomfort on the left side. He said why don’t we try and work on that one side and if it works, then you know that if you get the symptoms again on the other side, you at least know for sure what it is . The problem is my insurance here in Arizona will not cover it out of state and he quoted me $35,000 for the surgery. This does not include traveling there, food, hotel cost, etc. I do not have this kind of money. It has been a constant battle. I forgot to mention that a couple of years ago I did have a surgery by a doctor here in Phoenix, Arizona by the name of dr. Santarelli with barrow Institute I would not recommend this doctor for anyone struggling with Eagle syndrome based off my extensive research, I came to the conclusion that this is what I had before I was even diagnosed. I told the doctor I felt strongly This is what I had, but he just ignored me. Since I was desperate and trusted that he was the professional who knew best we did a blind surgery obviously it did not address the issue as he shaved down my hyoid bone after surgery weeks past and I followed up with him telling him that I do not feel any difference and the issues still persists. He told me maybe I should try talking to somebody about this pretty much insinuating that I’m crazy. Now back to present day with confirmed diagnosis I reached back out to him. He did not want to speak to me on the phone, but told his assistant he remembered me, and if what he had performed did not fix the problem he can not do anything more for me. I have been appealing my insurance with Mercy care as they clearly told me that this specific surgery would be fully covered in the state of Arizona however, the only doctor that I can find that is familiar with this specific condition and was actively and successfully performing eagle syndrome surgeries has retired. His name is Dr. John Milligan. My insurance denied my appeal and provided me with a list of doctors I can reach out to that would be able to help me I went through and called every single doctor on that list and each one either heard of it, but has never performed the surgery or never heard of it at all to begin with. This surgery requires a very specific skill set. I do not want to go through another blind surgery. I have already done this once. I have been jumping through hoops for so many years. I am praying for some type of relief soon as I am truly running out of hope if anyone out there is seeing this and is going through the same thing prayers to you. It is a very challenging condition to live with. -Gabriel Mendez